Bill Turrene,
Thanks for posting the text of Dr. Lieberman's (and Muhammed Ali's)
testimony before Congress. I have been clicking the channels on TV trying to
see if was on somewhere. All I was able to find was a bit that showed Ali
and Dr. Lieberman coming into the meeting. This is especially important to
me as I not only have PD, but Dr. Lieberman is also my Doc and Ali and I are
from the same home town . That should certainly mean I'll be first on the
list when they find the CURE doesn't it?  LOL :-) .
Hangin' on the ropes, waitin' for the bell to ring.

Bob Chapman 65/2
[log in to unmask]
Sun Lakes, AZ
-----Original Message-----
From: BTurenneJr <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Thursday, March 26, 1998 2:58 PM
Subject: Dr. Lieberman's testimony before Congress: 3/26/98


>National Parkinson Foundation, Inc.
>
>Written Testimony of
>
>Muhammad Ali
>
>and
>
>Abraham Lieberman, M.D.
>
>before the House of Representatives Commerce Committee
>
>Subcommittee on Health and Environment
>
>"New Developments in Medical Research"
>
>2123 Rayburn House Office Building
>
>March 26, 1998
>
>
>
>Mr. Chairman and distinguished members of this Subcommittee, my name is
>Abraham Lieberman. I am Medical Director of the National Parkinson
Foundation
>and Executive Director of the Muhammad Ali Parkinson's Institute in
Phoenix,
>Arizona. I am accompanied today by my friend and patient, Muhammad Ali who,
of
>course, needs no introduction, and Mr. Nathan Slewett, volunteer Chairman
of
>the Board of the National Parkinson Foundation, whose worldwide
headquarters
>are located in Miami, Florida.
>
>We are here at the invitation of Chairman Bilirakis whom I want to
personally
>thank and commend for holding these hearings on "New Developments in
Medical
>Research." Muhammad has assured me that he would have preferred to speak
>directly to you today, but his Parkinson's disease has robbed him of what
was
>one of his most prized assets....the ability to speak with resonance. I can
>assure you, however, that his thoughts and muted speech remain as eloquent
as
>ever.
>
>We are here today for two principal reasons. First to enlighten this
committee
>and thereby the United States Congress, on the pathology of Parkinson's
>disease, at least what we currently know about its causes, course and
>treatment. Also, we would be remiss if we failed to use this opportunity to
>demonstrate once again, why more research resources are needed NOW to take
>advantage of some of the fantastic scientific breakthroughs that are at our
>door step.
>
>Parkinson's disease (PD) affects more than a million Americans, and costs
the
>United States more than five billion dollars a year in Medicare, Medicaid
and
>nursing home outlays. In addition it costs each patient five thousand
dollars
>a year for medications, doctor's visits and hospital stays. As a society we
>spend ten billion dollars a year for PD, without considering the indirect
>costs of lost income, missed opportunities and family disruptions. The ten
>billion dollars results in treatments that provide only temporary relief
>because there is no cure. No Parkinson's patient, no care giver, no doctor
is
>happy, nor considers the ten billion dollars well spent.
>
>At the time of diagnosis, every patient had probably had Parkinson's
disease
>for at least four years. Based on the time between disease onset and
>diagnosis, it's estimated there is at least one person who is undiagnosed,
for
>each patient who is diagnosed. In other words, there are probably two
million
>Americans with PD: 2% of the population over age 60, and 4% over age 70.
>
>The degeneration of nerve cells in Parkinson's disease is associated with a
>particular particle, called a Lewy body, in each dying cell. Based on the
>observation that the Lewy body is a marker for PD, and that 10% of the
>population over age 60 years have Lewy bodies without symptoms of PD, it's
>estimated that at least ten million Americans may develop PD, if they live
>long enough. Lest the young be sanguine, and relegate PD to senescence, 15%
of
>all patients who develop PD are less than 50 years of age. And the disease
>appears in adolescence. Given the increased chance of developing PD with
>increased life, what is the point of conquering cancer, heart disease,
stroke,
>and diabetes if the end result is a population, 10% of whom have PD and 10%
of
>whom must care for the afflicted or live in dread of being afflicted?
Public
>health, preventive medicine, and environmental safety are laudable goals
only
>if the resultant increased life span is satisfying and free of the plague
of
>Parkinson's disease.
>
>Parkinson's disease results from the death of pigmented nerve cells in the
>substantia nigra, part of the basal ganglia, the region of the brain
between
>the hemispheres, the creators and initiators of thought and movement, and
the
>brainstem and spinal cord, the executioners of movement. In the past ten
>years, as a result of developments in molecular biology, genetics,
>neurophysiology, and computer science, the mystery of cell death is being
>unraveled. It's known that some neurons are more susceptible to dying than
>others, that their death is associated with both external (to the cell) and
an
>internal (within the cell) generation of free radicals and this, in turn,
may
>be associated with the deposition of iron. Sadly, the end result of
>Parkinson's disease is that the human brain, the highest expression of
>creativity--rusts.
>
>Whether the cause of Parkinson's disease is an externally produced toxin,
AN
>internally generated poison, a defect in the cell itself, or an abnormal
gene
>is the now the subject of intense thought, debate, study, and
experimentation.
>A debate that, as recently as ten years ago, was conceptually impossible
and
>scientifically unprovable. Unraveling the mechanism of cell death in PD,
will
>increase our understanding of the more complicated, disintegrative
mechanisms
>in Alzheimer's disease and the aging process itself.
>
>Since the introduction of levodopa in 1967 it has been the mainstay of
>treatment for PD. Levodopa is combined with a dopa decarboxylase inhibitor,
to
>facilitate its passage from the gut. There are several drugs including
MAO-B
>inhibitors, COMT-inhibitors, and controlled-release levodopa preparations
that
>enhance levodopa's activity. There are several other drugs, dopamine
agonists,
>bromocriptine, pergolide, ropinerole and pramipexole, that activate the
>dopamine receptors.
>
>Recent discoveries have shown that nerve cells, heretofore considered
>incapable of regenerating themselves, are able to do so. This regeneration
>occurs under the influence of trophic, or growth factors, small molecules,
>poly-peptides, produced in the brain. There may be hundreds of trophic
>factors, each one specific for one or two nerve cells, so as to limit
>uncontrolled growth, and its resultant tumor induction. Several factors
have
>been identified, characterized, engineered and tested in animal models of
PD.
>One of them glial derived neurotrophic factor (GDNF) is undergoing clinical
>trials for Parkinson's disease. Knowledge of the mechanism of action of
>trophic factors will increase our understanding of cell death and aging and
>will lead to treatments heretofore thought possible only through immersion
in
>the legendary and elusive, "Fountain of Youth." The challenge is to
determine
>which trophic factors are relevant to which nerve cell, and which disease,
to
>deliver the factors into the nervous system and target them to the relevant
>cells. These are complex engineering problems, but ones, as with the World
War
>II Manhattan Project which produced the atomic bomb, are within the realm
of
>being solved with our present technology.
>
>Within the past ten years neuroanatomists, neurophysiologists and
>neuropathologists have distinguished differences between the caudate
nucleus
>and the putamen, the two components of the striatum. They have separated
the
>ventral from the dorsal caudate, and ventral from the dorsal putamen, and
have
>identified several cell types within the striatum. Meanwhile the
neurochemists
>and molecular biologists have further characterized the striatum's nerve
cells
>by co-localizing them with one or more of several neurotransmitters. The
>significance of the striatum's newly discovered external geography, and
>internal architecture is being scrutinized in PD and heretofore unknown
>relationships are emerging. While the external characteristics of the
striatum
>were being studied, the more important and challenging task of
understanding
>the internal biology of the individual cells has proceeded simultaneously.
>Specific proteins, and poly-peptides are produced in specific cells, and
the
>ability of a cell to produce a specific protein defines the individuality
of
>the cell. The ability to replicate, amplify or inhibit these interactions
will
>have consequences for our health and our civilization as profound, and as
>monumental as splitting the atom.
>
>Thirty percent of Parkinson's disease patients develop a dementia which has
>many similarities to Alzheimer's disease. A smaller portion of PD patients
>develop a dementia, at an earlier age, called Lewy-body dementia. Whether
the
>dementia of Parkinson's disease  and Alzheimer's disease are different, or
the
>same is now under intense investigation. Approximately 50% of Parkinson's
>disease patients become depressed during the course of the illness and
require
>counseling and/or anti-depressant medication. In some patients the
depression
>is a reaction to the PD, but in most, depression is an intrinsic component
of
>PD. Unraveling Parkinson's disease will lead to a better understanding of
the
>affective disorder.
>
>At the level of the human brain, as distinct from the human spirit, the
>formulation, initiation and execution of a thought, is conceptually similar
to
>that of a movement. An idea recognized in the Bible by the sages who
described
>the consequences of a stroke by saying, "If I forgot you, Jerusalem, let my
>right hand lose (not its strength or power) but its cunning." We are in the
>midst of a revolution in understanding the brain. The centerpiece of this
is
>Parkinson's disease. With increased financial support from the government,
>foundations and private donors, the scientific community will unlock the
>mother-lode of information contained within the Parkinson brain that will
>banish these diseases and ameliorate the aging process itself.
>
>Mr. Chairman, as I am certain you have witnessed, the Parkinson's community
>has mounted one of the most visible and effective grassroots campaigns in
>history to secure additional needed funding for Parkinson's research. The
>culmination of this monumental effort was last November's passage of the
>Morris K. Udall Parkinson's Research and Education Act of 1997. When the
Udall
>Bill was signed into law, both the President and Vice President
specifically
>recognized its intent as a very essential part of the Labor/HHS
appropriations
>Bill in which it was included as an amendment. Also recognized by the
>President was the bill's principal sponsor, and your colleague, Congressman
>Fred Upton who was on hand to witness its signing.  It was truly a great
>moment.
>
>I am proud to say that the National Parkinson Foundation regarded the
passage
>of the Udall bill as its highest legislative priority and lobbied
aggressively
>for more than two years in favor of its enactment. Muhammad appeared last
>April on behalf of the NPF before the House Appropriations Committee to
urge
>the Udall bill's passage and requested that that committee appropriate the
>funding called for in the Udall Bill after its enactment. That has not yet
>happened.
>
>The Morris K. Udall Parkinson's Research and Education Act is authorizing
>legislation. It does not provide for the funding that the entire
Parkinson's
>community has worked tirelessly for, and fully expects will hasten the cure
>for this dreaded disease. Today, the Congress has before it the
responsibility
>to fund the Udall legislation making this victory a full one rather than a
>hollow one.
>
>Some have said that the Udall legislation provides for up to $100 million
for
>Parkinson's research. The National Institutes of Health have recently
released
>numbers attributed to Parkinson's disease research that will soon exceed
the
>$100 million provided for in the Udall legislation. This makes it appear
that
>additional funding for Parkinson's research is not necessary.
>
>This conclusion is UNACCEPTABLE! Whatever the National Institutes of Health
>claims to be spending on Parkinson's disease is based upon an analysis that
I
>am personally not in a position to challenge. However, the entire
Parkinson's
>community believed that the Udall Bill would authorize at least $65 million
>additional dollars for Parkinson's disease research. This figure is based
upon
>the funds leading Parkinson researchers tell us are needed to dramatically
>advance our finding a cure or significantly improved treatments for
>Parkinson's disease.
>
>The Parkinson's community has sought, and believes it has found a
sympathetic
>and supportive ear in Congress. Parkinson's activists nationwide have
>sacrificed some of the best remaining years of their lives advocating a
>substantially increased federal investment in Parkinson research so that a
>cure may be found in their lifetime. To say to them now that there is no
new
>money for Parkinson's disease is also unacceptable. If Congress is to honor
>the intent of the Udall Bill it must appropriate $100 million of additional
>funds for Parkinson's research for each of the next three fiscal years.
>
>The NPF recognizes that federal funding is one of several ways to support
>medical research. Therefore we have taken unprecedented steps to increase
the
>role of the private sector in finding a cure for Parkinson's disease. The
>National Parkinson Foundation is the largest voluntary health agency
>representing the interests of people with Parkinson's disease. It supports
51
>NPF Centers of Excellence worldwide. The research conducted by these
centers
>is cutting edge and the grants it awards are subjected to a peer review
>process similar to that of the National Institutes of Health. It also
provides
>a myriad of patient services including physical therapy, occupational
therapy
>and speech therapy to persons suffering from Parkinson's disease.
>
>Furthermore, the NPF works closely with NIH in three ways. First, we
provided
>needed additional funding to the National Center for Human Genone Research
>when they were looking for the gene that was believed to cause a form of
>Parkinson's disease. Within a short time, that gene was indeed located as
>highlighted in the President's State of the Union Address. Secondly, we are
>cooperating with NIH in providing "bridge" grants to those researchers
whose
>grant applications were of high scientific merit, but fell just below the
>funding level. And finally, the National Parkinson Foundation has just
>designated the Parkinson intramural research facility at NIH as a NPF
Center
>of Research Excellence.
>
>Thank you, Mr. Chairman and members of this distinguished committee for the
>opportunity to appear before to talk about Parkinson's disease. Muhammad
and I
>have dedicated our lives to finding a cure for this disease and seek your
>help.
>
>I will be happy to answer any questions that you may have for either
Muhammad
>or me.
>